Things just keep on getting wackier here at Team Scarlett Headquarters. Scarlett is crawling full time, getting into everything (especially if it it is dog-related - dog food, dog water, dog's mouth...), I washed my cell phone in a pile of laundry after being puked on (such a glamorous life!), and our laptop bit the dust. Blood drive planning is in full swing. We just keep rolling...
Yesterday I had a strange experience. People say strange things to me all the time regarding Scarlett. I have had people follow us through stores, cry at the sight of her happy self, ask nonstop questions. For a while, we had "drive-by prayings" - when she looked sick, with a caved-in head and a feeding tube up her nose, people would just walk by and offer prayers without saying a single other thing. None of this really bothers me; I completely understand the fascination with an unusual condition, and I am happy to be an advocate for Scarlett and her friends by explaining as much as I can. However, today it hit me in a completley different way.
It was innocent. I was casually asked about my daughter. It came up that her birthday was coming, and I mentioned the blood drive. This led to the always-awkward question (always posed differently, but essentially the same): What's wrong with her? I gave the two sentence response, confirmed she is now doing well, and left it there.
A minute later, in an effort to make conversation, this person began explaining that when she was pregnant, she had an amniocentesis, looking for any problems with her baby, and that if they had found anything, she would have terminated her pregnancy.
I wasn't sure how to respond. I just nodded. But inside, it stopped me in my tracks. What exactly was the purpose of sharing her story? If she had found out her child was as sick as mine has been, she would have given up? If I had known Scarlett was going to be sick, I could have saved myself the trouble? I could not come up with an angle that made me feel better.
I know she was just trying to make a connection to a medical issue with a baby. It's out of the ordinary, something that most people don't encounter, so I don't expect anyone to have a relateable story. However, to imply, even innocently, that there was a way around my child's condition, that maybe I could have avoided having her, was the first time I have ever felt offended.
There's no right answer to what people should say to me. "I'm sorry" makes me instinctively reassure others; "That's too bad" seems such an understatement; "Poor baby" makes me immediately respond "No! She's doing well!". I don't want her to feel sorry for herself, and that means others not feeling sorry for her, either. Some days I want to talk about it a lot, sometimes I'd rather not, and I can't always predict what kind of day it will be until it comes up. I nearly always appreciate the effort, and I know that, even now, I don't always know what to say to someone in a similar situation.
It has become the PC way to avoid discussing the pink or blue question when pregnant to say, "We don't care, as long as it's healthy." But what if it's not healthy? What if you do everything right and your baby is still sick? Is that baby less welcomed, less dreamed for, less loved?
Like all new parents, I hoped for a healthy baby. I was (and am often still) devastated, as was every other parent I know whose child has been diagnosed with a life-threatening condition. We did not know about her tumor before she was two months old, and I am eternally grateful for that. I had two glorious months of getting to know her, learning to care for her, and falling in love with her that shaped and fueled the fight for her life.
I can't say what I would have done if I had found out about the tumor before she was born, but I hope I would not have given up on her before I even gave her a chance (and everyone's decision in this area is their own - I'm not saying mine is the right answer, but it is my own). A few doctors refused to give her a chance, and I will always be resentful toward them, no matter how much evidence they had for their opinions. They were just plain wrong.
If I had given birth to a healthy baby, I would never have had Scarlett. Her goofy smile, her sweet little snuggles into my neck, her voice calling for me...I would have missed all of that. Sure, it may have been an easier road - for her and us - but to a completely different child. All of the nurses, doctors, time in the hospital and that we got to stay home with her have shaped who she is, and the bond between our family. I will never regret that.
I would have loved a healthy baby, and I hope that we can keep working on getting Scarlett as close to healthy as she can be. But babies with illnesses, disabilities, and anything not "healthy" are just as magical, just as special and just as valued. Their parents are just as proud (if not more - we worked hard for that new milestone!) and just as amazed by their new developments, as minor as they may seem. I wish that every baby could be healthy, but I know that being "healthy" is not the only thing to celebrate.